Skip to main content

The Unknown: Dealing with Myasthenia Gravis

By Felicia Clark

It’s 6:50 AM

I am scheduled to work at 7. My car is neatly parked in a spot. I even backed up to showcase my skills. The walk from the car to the door of the building frightens me. I mean, what if I fall? You may ask me, “Why would you?” Or simply tell me to “Get back up.” But what if I told you that it’s not that simple. What if I told you that if I fall, I may not be able to get back up? What happens is my body becomes almost catatonic. Not void of feelings, but, at times, unable to functionally complete simple tasks like getting back up. Or to not fall in the first place.

Every day I run the risk of falling and being stuck wherever I have landed. Until my body allows me the opportunity to get up, or someone is kind enough to help a sista out without laughing. I have fallen and hit my face numerous times, so many times that I have lost count. I have the scars to prove it. I also have a lifetime of memories of bystanders' laughter to go along with it.

Shit. 6:52 AM

I have a confession. I have Myasthenia Gravis. Also known as the “Unknown” Or “Fingerprint”. The only claim to fame is from the fictional character Lucious Lyon from Empire. And it only touched the surface. Hallucinations? At times. Can't walk or talk? Yes. Hard time grooming? That too. There’s no cure for it. And there aren't too many people like me. Hence the name “Unknown”. And no two Myasthenics are alike, again, “Fingerprint”. And it's terminal. My lungs could collapse. I could stop breathing. I won’t be able to move. If no one is aware, I could go away. Forever. This scares me. I don’t want to leave my babies.

6:54 AM

What if I also told you that my skin hurts? No, I don’t have blisters or cuts. It’s from the prednisone. Which I take along with a cocktail of other meds. One of which I have been taking for 35 years. As I have gotten older, that particular pill has gotten smaller. Maybe I’m the one that has gotten bigger and the pill smaller? Age or prednisone? Whatever. All I know is that it went from that one pill to several others. Either way, my skin hurts, but only to the touch.

Sometimes, it is hard to receive hugs from my children and my loved ones. I don’t say anything, because I don’t want them to stop. Honestly, hugs mean the world to me. But they hurt. So much so that at times a bruise would appear. Just yesterday, my boyfriend caressed my knee in the car, and I winced in pain. But I didn’t say anything. I didn’t want him to stop. I love to be shown love in this way.

6:56 AM

Did you know that there were times that my facial muscles wouldn’t allow me to eat or drink? I told my kids if a fire breaks out to just go; leave me there. What if my MG decides to act up and prevent me from moving? I don’t want my kids to waste any time getting out of harm's way trying to save me.

When I think of it, I get sad. Everything is planned beforehand. Parking. Is the walk long? Is the sun mid sky? Is it too hot? All these things play a huge factor in how my day may go. The sun and heat are not my friends. Nor is the extreme cold. I must get plenty of rest before a huge activity, otherwise, I may as well not attend. I was that parent that had to plan activities with my children for late afternoon or early evenings. If push came to shove, I’d give in. I was that parent that had to watch her kids from afar. For example, the playground. I would find a nice spot under a shaded tree and cop a squat. Only running to push my kids on the swings if they became too persistent. And running back to my spot under the tree.

6:58 AM

My legs feel like dead weight. I just want to get across the damn parking lot. If I could just make to the front door.

7:00 AM


Popular posts from this blog

Ladies, Make Him Act Right! (From a man's perspective)

So ladies, we have a tendency to get advice from women about MEN far more than we should. So I have a special treat today. We're going to get some advice on how to entice, encourage, and exalt a man from you guested it.. A MAN. I picked one, who speaks with the sole purpose to educate. So some of his language may be a bit harder than you're used to but.. you will not be disappointed. Capt SistaGurl Out!  Introducing Tikko Brohey  Ladies do you feel like “dudes ain’t shit” or “dudes don’t act right?” Have you ever thought about the things you do that contribute to that? The answer is probably not.  Now granted there are dudes out there who just ain’t shit, and that’s just what it is. Majority of men are good men. But his partner can often determine just how good he'll actually be. Every woman deserves to be treated like a queen, as every man deserves to be treated like a king. The disconnect comes from when there’s an argument all the King and Queen shit is out the

Why the Death of DMX Hurts

By Capt SistaGurl Laura Miller DMX has always been a friend to the youth, specifically young black men growing up in the age of Hip Hop who needed someone to help explain the daily pain that they were experiencing. They had X in his edgy brilliance. He didn't walk around pretending to be someone he wasn't. He was someone who we’ve watched soar to the highest of heights and fall just as fast and hard.  Before DMX I don't think there was any rapper who had explained the pains of feeling abandoned better. He resonated with a generation of black males who were born in the '80s, '90s , and 00's UNLOVED. Our community often grazes over young black men in this way. Supported by no one but themselves. He touched them, and he also touched the women and men who understood this type of pain. His lyrics were true to who he was and who he would always be. A real ass dude trying to figure it out. Trying to understand the pressures of his celebrity. Navigating through The agon

The Church is Failing: The Young Black Male

This is a taboo subject. That I’ve thought about quite a bit but never had the courage to really vocalize. Courage and fear are funny things because one of them is just as strong as the other, it’s just a question of which one you choose to live in. So today, I choose to live within a courageous light. Why, being a black woman, and an active christian would I have a fear vocalizing my opinion on how black men have been failed by the church? Messages are often misconstrued based on the perception of the reader. Additionally, it’s best practice to NOT add any fire to the flame of those that question institutionalized religion. However, in this case, I think I’d like to get this out with the hopes that some black man, within a particular age, will utilize this post as a reason to do better in reaching young black men. There was a time when the core of the civil rights movement was centered around black men and women within religious faiths. They actively worked together,